Volume 3, Issue 3 (Winter 2004)
One Monterra Court, Rockville, Maryland 20850 · 301-838-9555
HAPPY HOLIDAYS! Now that Thanksgiving has passed and 2004 is ended, the MMSC is kicking into first gear. So much has happened this year and we have a great 2005 planned!
Our biggest news is the long awaited approval of the Elan/Biogen Idec drug, Tysabri (formerly known as Antegren.) After an accelerated application, Tysabri was approved mid-way through its two year trial. We are very excited and are awaiting its final results.
The MMSC continues to grow into the ultimate source for MSers in the DC Metro area. We have begun our fourth season of providing services and have received nothing but rave reviews. Currently, we offer support groups, exercise classes, teleconferences, patient education programs, restaurants outtings, and advocacy. For a young organization, we are doing great!
In June, I attended the Consortium of MS Centers annual conference in Toronto. I met many of the top MS professionals in the country, got ideas for future programs, made alliances with other MS organizations and had a grand time. I went by myself with my scooter and it was amazingly empowering!
Needing a vacation with my family, we spent a week this summer at a resort in Aruba where I learned the importance of sun screen and the ADA. Most was accessible and the staff was incredibly accommodating when things were not. My scooter was a blessing and will eventually forgive me for the salt water rust it withstood! Getting away for quality time with my family was awesome and totally do-able even with MS.
I want to point out an early highlight for 2005 – our Heuga JumpStart program on 1/8/05. It should be fabulous and we are very excited. I’ve enclosed an application as well as a form for all MSers and their family to return indicating what specific things you would like to do and learn about. Please complete and return it to us ASAP. The MMSC is your Center and we need your input to give you what you want.
Thanks and Happy New Year,
TYSABRI®, formerly ANTEGREN, APPROVED by the FDA!
After a long wait and a name change, the FDA approved Tysabri late in the day on November 23rd. Tysabri prevents immune cells from migrating from the bloodstream into the brain where they can cause inflammation and potentially damage nerve fibers and their insulation.
FDA approval was based on evidence shown in two trials, AFFIRM and SENTINEL. Both studies are two-year, multi-center and placebo-controlled. The AFFIRM trial studies 942 patients and is being conducted in 99 sites worldwide. The SENTINEL trial is based on 1,171 AVONEX-treated patients in 123 clinical trial sites worldwide.
AFFIRM patients receive an IV infusion of either Tysabri or placebo every four weeks. SENTINEL patients currently taking AVONEX, who continue to experience disease activity, add either Tysabri or placebo to their standard regimen of medication. In both studies, those taking Tysabri demonstrated reduced rates of clinical relapses compared with the placebo group, at the end of one-year. Those taking Tysabri also met all one-year goals, including MRI measures.
AFFIRM and SENTINEL are two-year trials. Two-year results are anticipated beginning in the first half of 2005. Information about Tysabri, including prescribing information, and its comprehensive support services, are available through a toll-free number (1-800-456-2255), and via www.TYSABRI.com.
What Causes MS?
The jury is still out on this one but the puzzle pieces are starting to fit together. “Recent studies support the theory that MS is most likely triggered by a combination of environmental and genetic factors that interact to determine an individual’s susceptibility to the disease and influence the course of the disease.” (Taken from an article by Paul Frohna, MD, PhD, PharmD and Craig Smith, MD in the Winter 2004 issue of MSQR.)
For instance, it has been known for a while that individuals raised in a cold climate up to the age of 15 are more likely to get MS than those raised in a warm climate. It is also known that Vitamin D plays a major role in the prevention of MS. Unfortunately, it is difficult to get the appropriate amount of D through diet alone because few foods contain it. The main source of D is ultraviolet B sunlight. Logically then, the further a person lives from the equator, (cold climate) the more likely they are to get MS and vice versa. The answer is easy. Take a Vitamin D supplement (ask your Doctor how much you should take.)
It is also widely thought that MS is triggered by a virus or bacteria lying dormant in the body. Many with MS show traces of previous Epstein Barr activity. Genetics are also being studied and found to play an important role in susceptibility to MS. However, no single event has been found to cause MS by itself. It appears that a combination of factors, different in each person, may be the cause of the illness. Once a cause is determined, a cure will be easier. In the meantime, we wait.
Keep up the great work researchers! You’ve come a long way in the last ten years and get closer to the answer every day.
DINE FOR CHARITY
14324 Layhill Road – 301-598-5440
Fine Italian Dining
Appetizers, Pizza, Strombolis,
Soups, Salads, Entrees
Coffee Bar and Martini Lounge
Thursday, December 16th
5 – 10 pm
(no carry out)
10% of all tabs go to the MMSC!
Please come out & support us!
We’ve Been Busy!
Since our last newsletter, along with all of our other services, we’ve had two teleconferences and a patient education program. All were fantastic and well attended. Thanks to Baldwin Sanders, RD, Heuga Center Consultant and Brian Hutchinson, PT, President of the Heuga Center and the Consortium of MS Centers, for speaking about Improving Your Health Through Diet & Exercise. Thank you also to Dr. Mishra, of McLean Neuroscience, for educating us on the Progression of MS. We were only expecting 50 people to attend but 150 came and we had a waiting list! One more thanks goes to Tom Stewart, PA, Rocky Mountain MS Center, for teaching us all about MS and Alternative Medicine. Fun and learning were had by all! We hope to get recordings and/or power point presentations on our web site soon.
Couch Potato Ball
Have you sent in your response card? The invitations were sent out in teal envelopes early in the year and the response has been resounding. For those of you who have not yet responded, the end of the year is approaching as is your last chance for a 2004 tax deduction. If you need information about the Ball, please call 301-838-9555 today!
One Dedicated Dude
Our ever loving thanks and devotion goes to John Barbee who finds moments in his crazy schedule to keep our web site looking great and up to date. Check out his creations at www.montgomerymscenter.org.
“A novel imaging technique shows that subtle, but ominous changes occur in unexpected parts of the brains of people with multiple sclerosis (MS) long before they develop symptoms … Currently, MRI testing allows doctors to identify MS related brain abnormalities in the so called white matter of the brain where the myelin sheathed nerves communicate with each other. The new technology images a different type of brain tissue called gray matter. Gray matter consists of the brain cells themselves; gray matter cells rely on the nerves in the white matter to communicate with each other.”
Researches testing the new imaging technology “found that changes in both gray and white matter were evident on even the first scan … show[ing] that the gray matter changes began nearly three years before the onset of symptoms whereas the white matter changes occurred shortly before the participant’s first attack ….”
In short, the new MRI shows brain changes in MS patients before symptoms are evident. Earlier detection means earlier treatment. Earlier treatment frequently means less progression and severity of disability. If we have no cure right now, catching and treating MS early is the next best thing. (Taken from an article by Peggy Peck in WebMD Medical News.)
Rebif: Studies Show More is Better
Serono, the maker of Rebif, has been running studies to confirm the efficacy and longevity of Rebif injections. The PRISMS study, designed to determine the efficacy of a subcutaneous injection, showed that Rebif successfully reduced the number of relapses, was well tolerated and was less likely to cause neutralizing antibodies. The PRISMS study did suggest that follow up studies were needed to determine the long term effect on MRIs.
Another study, SPECTRIMS, compared two treatment groups with differing doses versus a placebo group. Although MS is a progressive illness and Rebif did not stop the progression, those on the medication had less relapses than those on the placebo. Interestingly, women had less relapses than men and Rebif proved to be more effective on those who had at least one relapse in the two years prior to the study.
A third very short study, the EVIDENCE trial, compared Rebif to Avonex. At the conclusion of the study, 75% of the Rebif patients had no relapses while 63% of the Avonex patients were relapse free. MRIs showed that 48% of the Rebif group had no new lesions while 33% of the Avonex group had no new MRI activity. In blood samples, 25% of those taking Rebif had neutralizing antibodies and only 2% of those on Avonex had developed the antibodies. Those taking Rebif reported higher injection site reactions, elevated liver enzymes and abnormal white blood cell levels. (Taken from an article by Stacy Oswald, BS, and Timothy Vollmer, MD in the Fall 2004 issue of MSQR.)
Relapsing Remitting MS or Rockville Roadies for MS? Both! RRMS is a non-profit organization based in Rockville, Maryland whose mission is to serve the immediate, day-to-day needs of the Multiple Sclerosis community. Specifically, they help procure special equipment to help deter muscle deconditioning associated with Multiple Sclerosis.
All cyclists on the RRMS team log their cycling miles. The charity then asks residents and corporations to sponsor a rider for the cycling season. So far in 2004, they have accumulated over 40,000 miles.
Do you have to cycle outside to log your miles? Absolutely not! If you consistently ride a stationary bike, you can join the team. I did and it has motivated me to keep up with my exercise regimen while helping other MSers!
Aricept and MS?
“Aricept, a drug used in treating Alzheimer’s disease, might improve memory and mental function in some people with multiple sclerosis (MS), according to a new study … researchers … asked participants with multiple sclerosis associated memory and mental impairment to perform memory and mental skills tests. Next, they divided the participants into two groups.
One group took [an increasing dose of] Aricept for 24 weeks … The other group took a placebo for 24 weeks. At 24 weeks, participants were retested. Aricept patients had greater improvements in memory testing than the placebo group…” (Taken from an article by Miranda Hitti on November 8, 2004 in WebMD Medical News and reviewed by Brunilda Nazario, MD
Need holiday gifts? Birthday presents? Want to avoid those lines in the malls? Like to shop at 3:00 in the morning? No problem! You have everything you need and want at your fingertips. Just sit down in front of your computer, log onto our web site (www.montgomerymscenter.org), hop into one of our two shopping malls or Amazon.com and spend to your heart’s delight. Order food, clothes, books, CD’s, video games, televisions or anything else you can think of. The stores and ideas are endless.
The best part? The merchant donates a percentage of all of your purchases to the MMSC and you save a load of energy. The holidays are coming. You know you have to buy, so please, buy at one of our online malls. Thank you!
Traveling with MS? What fun!
So many MSers believe they can’t travel because of their disability or transportation. HOGWASH! If there is a will (and we are working hard to give you one) there is definitely a way. You can do almost anything or go almost anywhere if you plan ahead and utilize the right sources.
Scooter, wheelchairs, walkers, etc. all go on airplanes. Most cruise ships have accessible rooms. Resorts are usually accessible or find a way to be for your visit. Beaches even have special wheelchairs designed for sand travel. The internet is a fantastic source for finding the organization best fitted to get you to your destination and show you a great time!
One phenomenal example is a trip taken recently by Marilynne Rudick. She went on a kayaking trip in Crete. She even wrote an article about it and was published in the New York Times Travel Section. According to Marilynne, “I think that kayaking is such a great activity for people with MS and other disabilities that preclude walking. I love kayaking for the physical exercise, serenity and contact with nature. And for a few hours in a kayak, I forget what I can’t do. I used to be a jogger, then walker and cross country skier, and I’ve desperately missed that connection with nature that I’ve found again in kayaking.”
BEYOND – Double Betasaron
“The BEYOND program is an ongoing multinational, Phase III trial and one of the largest MS studies ever, involving more than 2,000 patients.” The study is designed to compare single dose Betaseron to double dose Betaseron. The first phase of the study demonstrated that both those taking either the single or double dose of Betaseron had no new or unpredicted side effects. MRI results showed that those taking the double dose had less active lesions. “These first data support our conviction that a higher dose of Betaseron could exert even greater therapeutic benefits for patients with MS than known from any other drug on the market today.” (Dr. Joachim-Friedrich Kapp) (Excerpts taken from the Fall 2004 issue of MSQR.)
CFC – #7499
It is that time of year again. The CFC has kicked off its 2004 campaign to raise money for non-profits in need. Last year, as newcomers, we received great support. Let’s beat those numbers this year! If you work for the government or know anyone who does, please pass the word and elect the MMSC as your charity of choice. Our CFC number is 7499. Giving couldn’t be easier. You need the tax deduction, your agency needs your pledge and we desperately need your donation. Please, designate 7499 and help us to grow. Thanks!
Do you like goats? This potential MS treatment is produced from the serum of blood obtained from specially vaccinated goats. To date, the trials have been very positive with many patients reporting significant improvement in their MS. Aimspro is easy to use as a subcutaneous injection. The only reported side-effects have been a slight irritation at the injection site.
So what is it for? Aimspro is another treatment to lessen the symptoms of MS. The problem is that it is not available. The product is currently undergoing Phase III trials and will hopefully be approved within the next year or two.
The best part? The goats are very well cared for. They live on a farm in the USA, are looked after by qualified keepers and are certified free of any disease. They roam around in large paddocks donating serum (much like people donating blood) as needed.
More info to come …..
An MS Pill?
GlaxoSmithKline is developing a multiple sclerosis pill that is similar in action to the new Tysabri. The product, known as 683699, is in the second of three stages of human tests generally required for FDA approval. GSK said it expects to seek approval of the MS medicine in 2008. (Taken from an article in Bloomberg written by Angela Zimm on November 23, 2004.)
Thanks to all those who enjoyed a meal at Seibel’s restaurant on our behalf. For first-timers, we did great! We’ll be doing it again next year so … keep an eye open for the notice and have some homemade ice cream! The regular food is good too.
Confusion about methotrexate doses may be responsible for serious side effects. One of only six licensed medicines taken orally, methotrexate is only to be taken weekly and not more frequently.
Methotrexate is both widely prescribed and very effective when taken properly and in the right dose. If you take this medication, check the prescription label and your doctor’s instructions to ensure that you are taking the correct amount. (Facts taken from an article in The Guardian by James Meikle, health correspondent on Friday, July 30, 2004.)
Calling all Volunteers
We have a very busy 2005 planned and we need your help! Want to take on a fund raiser project? How about help out at a scheduled event? If you are willing to devote a small or large amount of time to the Center, please call 301-838-9555 and let us know. We need all the help we can get!
Intimacy and MS
A healthy relationship is an intimate one even when MS gets in the way. Intimacy doesn’t mean sex. It means anything that makes one person feel close to another in a personal and private way. It involves the whole person – mental, emotional and if possible, physical. Being intimate with someone can always be scary and MS adds more roadblocks. The answer? Communication, trust and respect. The Fall 2004 issue of the MSAA Motivator, contains an excellent article on achieving intimacy with MS. The following is a synopsis of this article.
“Many individuals may feel defensive or embarrassed when talking about intimacy …. couples should be proactive … talking openly about their needs and desires …” “Spontaneity … setting a different scene for romance … and patience” are key.
Self image is often affected by MS and plays a huge role in being intimate. If you don’t feel well, it is hard to imagine that someone else will find you attractive. Fatigue, mobility, coordination and urinary changes can also lower your confidence. Fortunately, all of these can be overcome. Medications, mobility aids and most of all COMMUNICATION with your partner will bring intimacy back into your relationship.
The choice is yours. Don’t let embarrassment or symptoms challenge your relationship. Speak with your partner, your doctor and your friends with MS. Maybe even buy a book on intimacy. You are in control.
If you’d like to read the whole article in the Motivator, visit www.msaa.org or call 1-800-532-7667.
Way to Go California!
On election day, Californians came out to pass Proposition 71 leaving California poised to become the world leader in stem cell research. “Scientists say the state funding will accelerate their quest to develop treatments and cures for a slew of diseases including … multiple sclerosis. But the field is still very much in its infancy and even with new state funds, the technologies that would form the basis for the promised cures are several years off, and the actual cures may be a decade or more in the making.”
“A number of technical hurdles need to be cleared,” said Leonard Zon, a stem cell researcher at Children’s Hospital Boston and president of the International Society for Stem Cell Research. “including how to coax the stem cells to develop into different types of cells and tissues, and how to transplant them into a patient … Despite the scientific challenges, researchers are optimistic about the potential.”
“Other efforts are already under way in New Jersey, where the governor pledged $6.5 million for a new embryonic stem cell research center at Rutgers University and in Massachusetts where Harvard University is aiming to raise $100 million in private funds to build a stem cell research center that would create new embryonic stem cell lines. Prop. 71 could inspire even more states to follow California’s lead or be left behind, Zon said.” (Taken from an article written by Betsy Mason on November 4, 2004 in the CONTRA COSTA TIMES.)